Saturday, March 30, 2013

Michael and I spent quite a bit of time coming up with titles for this post that we didn't want to ever have to write.

We are absolutely heartbroken to report that Sam's leukemia has returned.

Remember that "false alarm" from a month ago?
On Tuesday night, during the second Seder, Sam told us he was in the same kind of pain.
Considering that they had visited Pump It Up that day, we were relatively unconcerned...

Until the pain kept him up all night. And by him, of course, I mean him and his parents.

For three nights. An x-ray on Thursday morning at Highland Park Hospital revealed no fractures (whew) so we waited until our scheduled checkup on Friday to go up to Children's.

By 5:30am on Friday morning, we were toast. So Sam and I packed it up and left for our appointment quite a bit early. They were incredible, and took us into the clinic way before our scheduled time.

Frankly, I took one look at our doctor's face as he came in to tell me about the blood test results and I knew what the answer was.

"There are some cells on the smear that we don't like. We'd like to do a bone marrow biopsy to be sure, but we believe that the leukemia has relapsed."

Relapse sounds a lot like collapse, which is pretty much what I felt like doing.

So we waited around all day for the biopsy...I will spare you the saga of keeping Sam from drinking and eating for the whole day.

The biopsy results were exactly as we'd feared.
Leukemia, relapse.

There's something interesting about this relapse business. It's not quite the same as when we came in the first time. That time, we were totally scared, overwhelmed and felt, as a friend said, like we'd fallen down Alice's rabbit hole. This time, the rabbit hole is more familiar and it's populated with people we have come to know, love, and, most importantly, trust.

Our people came out of the woodwork. Nurses and nurse practitioners and doctors came to see us as we waited. We felt cared for and protected. I think that last time I felt like it was "us" against "them." Now I know, with the utmost of certainty, that we are all on the same team.

The team is already in place.
The learning curve will, for the beginning at least, be gentle.
The HOT unit is still there, we're hoping for an east-facing room.
(See? We know what rooms are the "good" ones.)
As I said to Sam, we know how to make hot chocolate, we know the code to the secret elevators, we know how to work the televisions. What more do we need?

Sam is, understandably, incredibly upset. I have no words for the task of explaining to my 7-year-old that the cancer is back. So I chickened out and made the doctor do it.

Some details, a plan, a treatment....
They sent us home for the weekend. Hospital weekends, especially holiday weekends, are pretty awful. (They said a few days won't kill him. Terrible cancer humor, but laughing is what keeps us going.)

So we headed home, to return to CHW on Monday.

To insert a new central line.
To start chemo.

Our new challenge: the treatment for the relapse of AML is, ultimately, bone marrow transplant. We don't know exactly how or what that will be like for our family, but I am quite blessed to know that we have some perfect matches within our own family. This does not mean that YOU should not be on the bone marrow registry. Do it in Sam's honor - don't wait. I canNOT imagine being told that your child needs a bone marrow transplant and NOT having the luxury, as we do, to have family donors. More on this later as we learn more from our doctors. It is new for us and frankly, very scary. But we have the BEST doctors in the country on the case. Seriously. People come from all over the country for a bone marrow transplant in Milwaukee.

This is the beginning of the second chapter of our Cancerland journey.
Thank you for being there with us.

Friday, March 1, 2013

Tuesday, 2:23pm: Snow is falling thickly outside. Afterschool activities have already been cancelled. I'm in my comfy clothes, working on the computer while Solly naps. When the phone rings, and I see that it's the school, I assume it has to do with the snow.

School nurse: Hi, I have Sam here and he says his knee hurts. And he is worried because it's just like before.

If I tell you that I nearly dropped the phone...if I tell you that I burst into tears...if I tell you those things, I know you would forgive me for losing my cool.

I asked to talk to Sam. In a very calm, small, quiet voice, he said, "Mom, it feels just like when I was first diagnosed."

I swallowed hard.
My seven-year-old knows the word "diagnosed" and uses it properly in a sentence.
We discussed whether he should stay at school or not. With the snowstorm, and only about 45 minutes left in school, he decided to miss gym but rejoin his class for music.

And I called the clinic.
In tears.

They were, as usual, amazing.
As a fellow pediatric-illness-parent-friend said to me, they know every nook and cranny of the cliffs that we are ready to jump off. This one was a pick-up-my-kid-in-a-near-blizzard-and-drive-all-the-way-to-Milwaukee-for-an-MRI kind of cliff.

But they talked me down. He had gymnastics on Monday. Maybe he wrenched it? His joints and bones could be affected by the chemo and this could just be residual effects. It could just be normal-kid-aches-and-pains.

Sam had a clinic appointment scheduled for today, Friday. A regular check-up. The ones that I'm not supposed to worry about. The ones that they told me were just for routine.
That we would notice symptoms if anything was happening.

Tuesday night, he limped around. He took a bath. He snuggled while we read Ramona Forever.
As he went to bed...he said, "I hope it's not leukemia."

I said, "me too."

By Thursday, he was fine. No pain. Except the one inside my stomach, waiting to have a medical professional PROVE to me that he was fine.

I was up all night last night waiting for today's drive to Milwaukee. What would the results say?

It's all fine. He's fine.
Numbers normal.
No worries.

Well, not at least until next time there's a false alarm, right?

Chocolate pudding & a movie at 10am? You know we're in Cancerland for the day.